dementia care partner mom investigated for having daughter help with care

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom. I shared her great ideas previously here and here. On February 3, 2019, Catherine, who lives in New Jersey, USA, shared a post on USAgainst Alzheimers that made my blood boil. Here it is in its entirety, reproduced with Catherine’s permission:

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Well, this is how upside down the world has become. My 16-year-old daughter wants to go to nursing school. I am a registered nurse and frankly, I wish she would find another profession, but I believe it is her choice. I try to tell her she does not need to go to nursing school because I am a nurse and it is no way like it is portrayed on Grey’s Anatomy!

Her school offers two vocational classes one for medical assistants and another class for those that want to go to college. The last, you need to have good grades. She is is an A / B student. To make a long story short she was so eager to get into the program, she tells her guidance counselor that she helps me care for her dementia nanny.

I get a knock at the door: two police and two Division Youth and Family Services workers. I was so embarrassed. The social worker starts out with may I come in? We received a complaint that you let your daughter care for her grandmother and you make her feed her…ect. I said come in, but I am going to record you! How dare you! Well, my mother played with my phone and put it into a knock lock mode, so I could not record, but they did not know that. The lady tells me that I could not record our conversation. I said like hell I cant! This is my home and you are standing in front of me, four people. Who is my witness! The policeman said yes it was my home, and yes I could record.

Thank goodness my son was visiting. I went and told him to sit and listen to our conversation. I told them that my daughter has never given my mother a shower. I only asked her to help get her in the tub, I told her I am a nurse and did not use my daughter as a slave. My daughter helps me keep Mom steady when we put on her depends and only once she cleaned moms ass. Only because she pooped when I was at the grocery store. My son told the lady that was the truth and that when my mom soils herself. Even if he volunteers to help I just instruct him about what supplies to get or to make mom’s bed. I told the ladies if I made my daughter my mother’s aide, why did I drive my kid to school and why did I let her go to a friends house during the weekend?

I told the ladies that as a nurse I taught my daughter how to use the hospital bed, turn Mom, and help my mother out of bed with not one person but two. She knows never to get Mom up alone, ever! If I have to run to the doctor I tell my neighbor who is a nurse. My mother is DNR and DO NOT HOSPITALIZE and all the papers are on my refrigerator and posted on my mother’s bedroom door. They ladies went and looked at my mom, they looked in every room of my house. My home is clean!

The one policeman whispered in my ear how sorry he was and he sees I take excellent care of Mom. So I call the school and find out it was my daughter’s counselor that made this call. I said did it occur to you that my daughter was trying to let you know she wanted to get into the vocational program! If I used her as a slave, I am very sure she would not want to be a nurse! That she needed a parent’s signature to get into the program, so she is the one that came to me to sign the permission slip! Dumb ass counselor.

Social services left telling me that it was a misunderstanding. I said yeah – how about this false allegation and negative effects could or would have on my clean nursing license. Now I have to wait to get a letter of clearance. Waiting. Called the school; the counselor said that social services never called her back …so I said they came out 24 hours after you made your false accusations and its taking weeks to get a letter from them to get cleared…DID YOU FOLLOW UP? So if I understand correctly you called social services and they came to your school and questioned and investigated my daughter first before they came to visit me to make sure our stories lined up – which they did – they talked to me and never took my daughter from my home, because you made a bogus call and wasted taxpayers money? My daughter’s counselor did not like my words and common sense. She hung the phone in my ear!

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I find this story absolutely astounding, and a clear example of how the work of family members who are dementia care partners is so terribly misunderstood, particularly by many so-called “professionals.